Feeling lost and depressed

[tamesis]

I'm so frustrated, and down, and i just don't know what to do. I don't even feel like being on here, which has been my saving grace the past while.....I think in a sense i have a bit of jealousy for those with diagnosis, as dumb as that sounds.

I'm just so lost. I don't know if i should be getting a second opinion, or being more assertive and saying "do this, do that"', or what. I'm thinking i'll write a little letter for my doc asking for a pred taper and a SBFT, and just be assertive, but i just don't know. And i don't see my GI for six weeks, and i just feel like i'm going to go nutso in that next six weeks.

Don't get me wrong, i don't WANT crohns, i really don't. But i know there is something going on, and what they heck is it?! I'm just so down, and this whole week i was feeling so optimistic, so upbeat, encouraged that they were finally going to figure out what was wrong. I was hoping to get it figured out and get back to work before my uneployment runs out, i'm scared of us being without my income for an extended period of time, and i'm feeling like i just need to suck up and get back to work. But i also don't feel like i can be a good nurse if i go back to work, i don't have the energy to take care of myself, let alone other people.

Anyways, i can't even see because i'm crying so hard right now. I guess i just needed to let it all out.

 

[Crohn's 35]

ooooooooooh Hon, please cheer up, as you may know this is stress and that can make your gut worse. We all feel what you are going through even when we do have a diagnosis. I remember when I got first dx in 1992-93 it was scary time because NO one had a clue what it was. My Gp was just out of Med school and she was in a clinic with a bunch of older men whom she followed the drill. All of them came close, one said Ilietis and one doc thought I had a tubal pregnancy... ha, I assure you it wasnt. It took a long time for doctors to figure it out, and a GI frustrated because he knew I had Crohns or Ulcers in the intestine. It was scary for my family because we were suspecting the worst. Trust me my eyes where never far from a tear. But...I had a 4 year old and going through a custody battle that I need to hide my illness so I wouldnt lose her. When you feel down, pick yourself back up, and keep going, it will make you stronger, that I can promise you. You do have to look after you, because no one else can.

Big squishy hugs and a kleenex for you too. One step a time, you are so overwhelmed. Are you still in alot of pain?

 

[shazamataz]

Oh Pam, I hear you and am here for you. You have no reason not to be here, just because you don't have a diagnosis, you still have poo problems and that qualifies!

I agree that you ougth to demand a pred taper, or entocort, as if that helps you then that would indicate inflammation and this IBD of some sort. I am surprised they are happy to leave you so long and not give you any meds if you are feeling so sick!

Maybe go to the ER and exaggerate your pain a little bit? I was on a waiting list for a scan when I gave up and went to the ER. I was pretty sick though with high fevers and stuff. I still can't beleive that I saw the GI and he saw my blood tests and heard my symptoms (bad fevers, sweating through my PJs twice a night, severe weight loss, inability to poop, pain, off the scale CRP and ESR as white cell counts...) and still sent me home to wait a month for a scan!

So, I took myself off to the hospital, was admitted and they found 'moderate' crohn's in the ileum along with abscesses and fistula! Now, imagine if I had waited another months to even get that looked at!!!!

I hope you get sorted soon. Meanwhile it is okay to feel upset, but try not to let it get you too down as that only makes things worse.


((((((((((((((((((HUGS)))))))))))))))))

 

[Peaches]

My heart goes out to you Pam. You are just so sweet - and it can be so frustrating walking around without a diagnosis and being sick all the time. I'd ask pretty please for a SBFT and then after getting that - if they still can't tell you anything, I'd ask pretty please for a pred taper "just to see" if that will help anything. I'm sorry! ((HUGS))!!!

 

[tamesis]

thanks ladies. I'm trying so hard to be optimistic, but i just feel hopeless. My closest girlfriend is coming over tonight, i almost said no, but i think it will be a good idea to have someone around to keep my mind off things. She has Colitis, so she's really understanding. Hopefully i'll start feeling less down about things soon.

 

[Sue-2009]

HUGE HUG to you...Been there...sometimes still there. We crohns people are stronger than people realize. Its okay to feel bad for yourself, but not to long. Vent and rave here. We'll listen...."Tomorrows another day"--- Have fun with your girlfriend... Sue

 

[Trysha]

Hello Tam
it is hard to be optimistic in the face of all the adversity, and no GI help in sight for the next six weeks.
You do need to speak with an MD,however as soon as possible.
Can your GP ie personal physician help you through the maze?
Can you phone your GI specialist and leave a message for him/her to call you and
discuss the distress you are going through?
We all pay very dearly for our health system and are entitled to medical help when we need it.
Failing this, I would go to the ER and ask for help, and be very clear about the pain and suffering you are enduring. They are usually quite responsive and can pull out all the stops if necessary.
Just don't continue to suffer all this.
I do now what it feels like to dither about calling MDs but mostly they will be helpful and it is their mandate to relieve suffering.I also know about being put on the back burner but now I will not endure it any more.
((((HUGS))))) and prayers
annsplash

 

[RachLG]

Hi there Pam - I'm so sorry you're feeling this way...the truth is that could have been my post! I was tentatively diagnosed with CD about 2 months ago and just saw my GI a week ago who now thinks I might not have CD. Of course. I know just what you mean when you say you don't actually want crohn's, but the possibility of any diagnosis is almost comforting. I don't know if you're anything like this, but I have gotten a few dx'es over the last 2 years and the brief period after the dx (before the crushing blow of the 'take it back') - some of my best days live during that time. But I just keep telling myself that I know my body, as Oprah moment as that sounds, and it's impossible to feel this bad without there not being something wrong. What I've recently taken to doing is writing down all my symptoms, all my questions, and all of my proposed "next step" options I can think of between doc visits. Then, when I go in I MAKE myself read every single one - whether the doc has anything to say, at least he's heard me say it. I even call ahead sometimes to tell his nurse that she better have scheduled me some good time I hope you get your answers soon

 

[imisspopcorn]

That's a great idea RachLG....Good luck to you as well.

 

[tamesis]

He upped my meds....i really, really like my doctor, he's such a good listener, and supportive. He listened to how i've been feeling, asked about different possible triggers, it was fairly cathartic. So, he's told me to double up, and go from there. I don't *think* it's an adverse reaction, i'm certainly feeling slightly better than before i started the antidepressants, just not back to feeling human again yet.

 

[tamesis]

Oh, and i did write a list, and it REALLY helped me stick to my guns when in the appt., thanks for the tip!